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Hellllllooo

Joints are doing fine. Lungs suck. I have been getting headaches all of the time. they say it's from not enough oxygen.

I went skiing and kicked ass. Turns out it doesn't hurt my joints, and the next day I feel a really good sore. So that's awesome.

Working from home so I don't have to go out in the cold, and then I am going to go night skiing tonight. Maybe, it's really really cold.

Also found out people with RA tend to hit menopause super early.

Thanks to all of the support I have. you guys are the best.

Grilled cheese sandwiches are the best on a cold day.

It's just a bad day, not a bad life

Well hello

I went on a bike ride the other evening. I used to be able to bike 17 miles a day, at least 4 days a week. Now I can only manage 1.5 and I barely made that. My lungs felt like they were filled with rocks, and I couldn't get enough air into me no matter how hard I tried. I can't believe it got this bad after just a couple of months.

I am waiting for my pulmonologist appointment. My doctor referred me to some information to read online. One of the more depressing thoughts was

"Idiopathic pulmonary fibrosis has a poor outlook."
Well this is going to be fun.

The good news is my steroids and Malaria medications are helping greatly. I wake up and stretch, then I am good to go! Just a little burning in the joints when it is cold.

Addendum: I hate how the websites all talk about my lung disease as basically saying "there is no treatment, goal is to make the patient as comfortable as possible".



I had the best chicken sandwich ever over the weekend. I think a sammich is always better when a mom makes it.

Mosquitos

With my new medication, I can now travel wherever there is Maleria.

Trying new medication and steroids. Sasha Strong.


It makes me jittery. Didn't sleep last night, took some this morning again. Maybe I will be able to sleep tonight. I could use a good 8 hours.

Had a good walk this morning to the train, and then I was minding my own business, and my knee gave out and my elbow ended up in some guy's ribcage. 

Absolutely nothing exciting or eventful. Just tired, tired, tired.

I bought this and it has been shipped to me today.

Maybe it will remind me that I will overcome all of this.

Happy Weekend =)

To the three of you that read this.

Thursday

I thought I was tough.

My hands and feet have been going numb recently. I haven't been able to keep food down, and I don't sleep much anymore.

I have an appointment on Thursday to see what is going on with my liver and my hands and feet. MX can cause liver problems.

What scares me is this is the most aggressive treatment out there, and if it's not working...

I had a deep heart to heart with my friend last night.

WARNING: Morbidity ahead

You cannot die from RA, you die from symptoms of it. It's just constant suffering and pain and annoyances.

Anyway, I went to Cape Cod last night. wanted to get away from everything, which was awesome because I spent over 15 summers there growing up, and I felt so carefree for the first time in a long time.

Pulled up to the beach I used to go to when I was little. Then Matt treated me to a nice dinner out. It was really nice not worrying about anything, even if it was only for a couple of hours.

These posts are getting shorter and more depressing. Harder to type.

Here's to a good news Thursday.

1/4

Last night I hit the 1/4 way mark.

I took my Fourth dosage. I see my doctor the last week of January. Supposedly I'm only supposed to take it 12 times. My hair is already thinning, and getting out of bed is hard. My knees constantly feel like they are going to spontaneously catch on fire, and my hands cramp quickly.

Other than that, I am fantastic. Great support network, and I can still cook delicious food. I can't wait for winter to be over. I sleep with my heating pad between my knees and it's fantastic.

Now only if we could get more than 5 minutes of room temperature water in the shower... I'd be happy as a clam.